Why Can’t I Just Go Gluten-Free On My Own?

July 5, 2012 at 10:49 am 9 comments

Researchers from the Celiac Center at Beth Israel Deaconess Medical Center in Boston have published a new paper on the gluten challenge. Late last week NFCA covered the recent publication in our Research News Feed – you can check out the post here.

Many are familiar with the gluten challenge as it relates to the current hot topic (or dare I say, trend?) of self-diagnosis and the implications that come along with going gluten-free before being tested for celiac disease. People often equate the words “gluten challenge” with the sentiment, “Why would I put my body through torture if I know what unpleasant symptoms to expect?” I can certainly understand this perspective as I tend to suffer from a range of unwelcome digestive disturbances when gluten has a found a way into my diet.

But, I thought I’d take this opportunity to also share my personal views on why I believe an official diagnosis of celiac disease is so crucial, both for an individual’s health and the greater field of gluten-related disorders at large. I’ve actually covered this topic before, in the early days of Celiac Central: Bits and Bites. As you can see, I feel strongly about this particular subject.

1.  Expert guidance!

Celiac disease is an autoimmune disorder requiring expert management and follow-up by a knowledgeable physician. Clinicians can closely monitor a patient with celiac disease to ensure that their celiac antibodies (blood work) return to normal and can keep an eye out for unrelenting symptoms that may indicate a need for additional testing or require supplementary treatment. A dietitian skilled in the gluten-free diet can ensure that individuals with celiac disease are meeting all of their nutritional requirements and can also assist in weight management, a challenge that in recent years researchers have identified as an important topic to discuss in celiac disease management. Registered dietitians or nutritionists can also use their expertise to determine if a patient is being accidentally exposed to gluten through routes such as misinterpreted ingredient labels or cross-contamination in the home or when dining out. (Did you know that gluten exposure is the most common cause of non-responsive celiac disease?) It’s important that people understand that the gluten-free diet is complicated and requires guidance. Relying on the internet and library books alone is no replacement for a healthcare provider.

2.  More expert guidance.

What’s more, if celiac disease is not properly treated or managed, a person is at risk for developing other health complications involving their bone and reproductive health, as well as some cancers. Of course, there is also the chance that a person who has implemented a gluten-free diet because they think celiac disease is the culprit, may actually not have a gluten-related disorder at all and instead have a different underlying (and untreated) condition. Just as celiac disease can mimic the symptoms of other conditions, so too can other conditions mimic the symptoms of celiac disease. For more information on this, see this handout from Quest Diagnostics: Why Not Just Go Gluten-Free?

3.  It applies to your family, too.

Further, celiac disease is genetic, which means that it often runs in families. Persons who have a first or second-degree relative (i.e. parents, siblings, aunts, uncles, cousins, grandparents) diagnosed with celiac disease need to be tested for the autoimmune condition as well. It’s particularly important that family members of people with celiac disease understand that they don’t have to have the same symptoms as their relative, or in fact, any at all, in order to have celiac disease.

4.  We need collaboration.

Research in the field of celiac disease and other gluten-related disorders has grown exponentially in the last decade regarding subject matters such as disease signs and symptoms and the role of the gluten-free diet. However, one puzzle piece that remains missing is the number of undiagnosed versus diagnosed patients. Sure, many estimates abound but let’s face it – these are only estimates. It is difficult to ensure that persons are accurately diagnosed and managed if they are treating a disease on their own. In order to successfully advance treatment and testing, we need the assistance of the patient population.

It’s great to see people taking responsibility for their health and implementing what they believe to be a healthy lifestyle, but I think that it’s just as important that patients recognize the important role medical providers play in the management of their health. If your current physician has refused to test you for celiac disease, don’t stop there. You can share NFCA’s free Primary Care CME with them or seek out an experienced clinician. Ask support group members for a referral and read local articles about celiac disease to see which healthcare providers are considered experts in your area.

If I haven’t convinced you to consider an official diagnosis, then I at least ask you to understand the reality of having to undergo a gluten challenge if and when you decide to consult with your physician. In other words, know what you’re getting into before you go gluten-free on your own.

I welcome an improved gluten challenge like the approach Dr. Leffler and his colleagues have studied. I expect that this new approach will bring about improved patient compliance and willingness to undergo a gluten challenge, and hope that other clinicians begin implementing this approach too.

-Kristin

Entry filed under: Kristin, Uncategorized. Tags: , , , , , .

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9 Comments Add your own

  • 1. Alisa  |  July 5, 2012 at 2:51 pm

    Check out this article

    Reply
  • 2. laura besser  |  July 9, 2012 at 5:57 pm

    i dont want anyones validation. i also dont care what anyone thinks.i diagnosed myself and im not giving anyone any money to tell me what i already know.do not give ANY reply

    Reply
    • 3. laura besser  |  July 10, 2012 at 12:26 am

      49 years and no one gave me any solution.it runs in my family too.my grandfather lost 2/3 of his stomach.my daughter has celiac.i realize that it was virtually unheard of,but since it didnt affect doctors and i was unwilling to throw money at them,nothing wasdone.my suffering was DAILY for years and years.so i have very little sympathy for the medical communityi
      it is obvious to me food allergy people have had to take care of themselves and make the sacrifices and feel isolated with virtually no help from the medical community at all because they couldnt recognize enough of a profit on our continue pain

      Reply
      • 4. Kristin  |  July 10, 2012 at 12:10 pm

        Thank you for your thoughts. Celiac disease is different from a food allergy, and I believe that the medical community and healthcare professionals have long supported patients with food allergies. Organizations such as FAAN and AAAAI have been around since as early as the 1940’s. Yes, it is true that FALCPA was passed only a few years ago in 2004. However, I think it’s important to recognize that the increase in the general public’s awareness of food allergies may be due to the actual increased prevalence of food allergies themselves. In fact, the celiac disease community might benefit from observing actions that those advocating on behalf of persons with food allergies have implemented in order to achieve greater awareness and acceptance of their medical conditions. However, I respect that we may have a difference in opinion on this.

  • 5. ridleysw  |  July 10, 2012 at 10:01 am

    Thanks for posting this! I agree that the Celiac test is helpful but only when the issue with gluten is caused by Celiacs. I do not have Celiacs – I have a severe allergy to gluten. It isn’t the same autoimmune response that occurs with Celiacs but it helped by the eliminating of all things containing gluten. The test for Celiacs is great but I have to encourage people to not assume it is the be-all-end-all diagnostic tool for gluten issues.

    Reply
    • 6. Kristin  |  July 10, 2012 at 12:11 pm

      Thanks for sharing your experience. It is true that not everyone who experiences unwelcome symptoms when consuming gluten has celiac disease. To my knowledge an actual gluten “allergy” does not exist, though wheat allergy and non-celiac gluten sensitivity are recognized conditions within the gluten-related disorders spectrum. It is important that celiac disease first be excluded before diagnosing a person with non-celiac gluten sensitivity or wheat allergy since all of these conditions involve different disease mechanisms.

      Reply
  • 7. laura besser  |  July 10, 2012 at 11:21 am

    like taking the test will somehow help glutan intolerance.im sick of being polite and enduring hardship.NOTDOING IT ANYMORE

    Reply
  • 8. Katrina  |  August 13, 2014 at 10:04 pm

    I’ve been gf for over a year, would love an official diagnosis, but don’t know what my next steps should be…. My doc did not seem remotely interested in testing me when I approached the subject with her about 7 months ago…

    Any guidance would be appreciated.

    Reply

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